I am Not That Strong

A co-worker/friend and I were talking today about having kids. I made the comment that I wasn't able to have children. She asked if we had thought about adoption. I said know and explained to her why not. Ya know, Robert having HD and not being able to go through an agency and not being rich enough for private. She asked some questions and I explained what it is to her as best I could. Imagine my surprise when she said she had never heard of Huntington's Disease (insert sarcasm here) Anyway, she told me that I was one strong lady to be willing to take this on.

I simply replied that I don't see it that way.

I don't think I am strong for being willing to do it. In fact, I often worry about what is going to happen and if I am going to be able to handle it. I would be lying if I said I wasn't scared. Granted, I have a good idea of what it will be like, but that doesn't mean that it will be easy when the time comes. It does worry me that it will all be too overwhelming for me and I won't be able to cope. And considering how frustrated both Robert and I would often get with Robert's bother, I often worry about how well I really will be able to cope with everything.

I already know that because of my own personal health issues, I will never be able to be the primary caregiver in his life. I will have to hire a nurse to do most of the major stuff like bathing and dressing and anything else that will require any lifting or so forth as it is. I am no where near strong enough to do all of that for him. Plus, the physical effects of my arthritis will make that even more impossible as I get older. So that adds another layer of worries. What if my health deteriorates faster than his? Robert often says that for all we know, he may be the one that has to take care of me in our old age.

However, I have faith that God will help us through all of this. Regardless of which way it turns out. He wouldn't have put us together if it wasn't part of some divine plan that we are meant to live out together. So, I know that when the time comes and Robert's disease advances to more serious stages, with God's strength and love, I will get through it.

And besides, we have had eight wonderful years of marriage and I am looking forward to many more years to come. I wouldn't give up the nine years that we have been together for anything. I have been truly blessed to have Robert in my life and will enjoy every second of it as long as I can.

In the end, all we really have is today. For all we know, one of us might be hit by a car crossing the street tomorrow. I do not know what the future holds, but I have faith that God does and He will be with us every step of the way. My strength for dealing with future will not come from any piece of me personally but from The Lord living inside of me.

When you're in over your head, I'll be there with you. When you're in rough waters, you will not go down. When you're between a rock and a hard place, it won't be a dead end— Because I am God, your personal God, The Holy of Israel, your Savior. (Isaiah 43:2-3 MSG)

Ten Years Later

It has been ten years since we had to say good-bye to my grandmother. Ten years that she has been living pain free from the cancer that had taken over her body. Ten years that she has been praising Jesus in Heaven.

A few nights ago, I had a dream that she died and it was like loosing her all over again. The pain was real and very intense.  I felt like I was transported back to that day ten years ago when I was stopped by the hospice nurse heading back to her room to say that she had gone. I just couldn't believe it.  I woke up grateful that it was a dream. I didn't want to relive that pain again.

After ten years, it doesn't mean that I don't think about her on a regular basis or miss her any less. I still wish she was here today. I wish that I could talk to her or go visit her like I used to. I wish that she had the chance to meet Robert. But, she wouldn't want me to live my life wishing for what might have been. Instead, she would want me to take the time to remember her and think of her, but not to waste it being sad because she isn't with us.

And that is what I try to remember the most. We cannot live our lives being dwelling on the past and that the person is no longer with us. Instead, we have to remember all the wonderful times we had together. Remember all the wonderful times that were shared together. I can still hear her words of wisdom, comfort, praise and discipline as I live my day to day life.

I know she is watching over me and is happy for the person that I have become and that I have continued to live my life instead of wondering what might have been. It does not make the pain of loosing her any less and it doesn't mean I still do not miss here. I will always miss her until I get to see her again in heaven.  But, I take heart in knowing that a part of her will always be with me and remembering all those wonderful memories that I spent nearly 27 years creating with her.  I am better person for it and will always consider myself lucky to have had her in my life for the time I did.

Oh my gosh!!!

So, have you ever gotten so busy with life that before you realize it, it has been more than a month since you have updated your blog? I am having one of those moments. We have been so busy lately that I just haven't had time to sit and write anything. And maybe I have been a little blocked, too. Who knows. I just know that it has been a while and a lot of things have been going on over that last few months.

The biggest change is that Bill is no longer living with us. Having him live with us was just too much for Robert. For those of you that are fans of Duck Dynasty, try having Si living with you 24/7. While it is funny in 30 minute spurts, when you have to live with it all the time, it can get old really fast. For those of you that have never seen Duck Dynasty, why the heck not? You have to watch it at least once. It is quite funny. And I will explain Si for you. He is the type of guy that knows everything about everything and is always right. Even when he isn't. And you can't tell him that he is wrong because he gets defensive. Only with Bill, it isn't funny. He gets very angry and it always leads to a fight of some kind. It is anything but funny. In fact, there are times that we watch Si and get irritated and frustrated because we fill like we have Bill back in the house.

Plus, it is really hard on Robert, too. When you have to take care of somebody that is dealing with the same disease that you have, it is harder than you can imagine. And that is what Robert had to deal with day in and day out. Plus, Robert would look at the things that were happening to Bill and see what he himself would be going through in a few short years. That adds even more stress to a person. So, when Robert's brother Kevin offered to take Bill, it was an easy decision for us to make. Thanks, Kevin, you have no idea how much this means to us!

Robert is doing good. He still has the occasional bouts of dizziness from the vertigo but it is not as bad as it was. And since Bill is gone, his stress level has gotten a lot better. He is a lot more of the Robert that I married. It is amazing how little you realize the amount much stress one little thing can cause you until that thing is removed from you life.

Now, we have begun to make some changes to the house. It started by buying a new area rug and has morphed into painting almost every wall in those house. Plus, we may be taking a wall down and refacing the kitchen cabinets next. We are in the mood for more change so we shall see what happens next.

Trying to Sense Of It All

Today is one of those days that I wish I could make sense of the tragedies that take place in this world. Especially when I have two neices in Kindergarten and teach more this age on many Sunday mornings. To think that they could have lost their lives today, and that 20 other innocent children their age did in fact lose their lives for reasons that I cannot and probably never will understand is heartbreaking.

That doesn't make it any easier, though. It still breaks my heart to know that what seems senseless to me has happened and drastically changed the lives of so many families. Trying to understand it and to make sense of everything that has happened only serves to make us crazy. There are no words that can be said to diminish the pain these families are feeling. There is no explanation that we can be given that will make sense.

For whatever reason, this has happened and we have to accept it. It isn't that God allowed this to happen. God doesn't condone the killing of innocent lives. The truth is that evil exists in this world as a result of our own free will. When so many have turned their backs on God, the evil continues to grow. Blaming God for it doesn't accomplish anything, especially when we are the ones to blame for it.

Instead, all we can do is pray for for those that have been affected by this horrific situation. Pray that God's comforting arms will be wrapped around the families that are suffering, that His healing touch will be administered to those who are injured and that everyone touched by this tragedy will find peace and comfort in Him.

So, tonight, we all mourn for these families and lift them up in our prayers. May they all find comfort in God's unfailing love. His arms are open wide and ready to embrace each and every one of them. And we can also take comfort in knowing that these children are in His arms tonight and no longer suffering.

Is this because of HD?

The Sunday morning before Thanksgiving, when Robert got out of bed, he immediately fell back on the bed. It took two or three more tries before he was able to stand up, but even then he was having a problem. The problem? He was extremely dizzy to the point that he couldn't stand up. Since this was a new experience, it worried us. Especially when he began to complain of these dizzy spells at all sorts of different times and when doing all various activities. It was always worst when he would get up first thing in the morning, though. And it continued to plague him daily.

Why is this happening? Is this a symptom of HD that we are not aware of? What is going on here? All of these thoughts are going through our heads as we wondering what this is all about. We were worried that he was beginning to experience a symptom of the disease that was uncommon and one that would have a major impact on his day to day life. I couldn't really find anything on any of my favorite HD websites that gave me any insight into whether or not it was some lesser known symptom or something. It was a bit nerve-racking for us.

Robert, being Robert, didn't want to go to the doctor. He kept saying that he would get over it. He hates doctors so he fights going to them unless he absolutely has to. So, I made an appointment for him that Wednesday and told him to go. Turns out he has vertigo.

Vertigo is a condition caused when tiny crystals that normal reside in your ear canal come loose so to speak and float around in your ear canal. This throws of your equilibrium and causes you to get dizzy, especially when you move your head certain ways - such as getting out of bed in the morning. There are any number of causes for it and it is hard to say what precipitated the condition in Robert.

The good news it is treatable in the majority of cases with some medication. So, Robert has been taking the medication and taking time to get out of bed in the morning, or attempting to sleep sitting up some nights when it is really bad to help the crystals return to their normal position so that the dizziness will go away. And he has noticed a lot of improvement.

Turns out that about 1% of people with HD have experienced symptoms of vertigo. Not enough to really make a connection as it being a real symptom of the disease. It is more of a random thing. But this experience does highlight the constant sub-conscience fear like state that a lot of people affected by HD live with. Every time something happens clearly out of the norm, like sudden onset dizziness, you worry that it is HD. Then, you put of seeking medical treatment for fear that you are right and the doctor will say it is HD and nothing can stop it. Because, once the more serious symptoms start, that is the beginning of the end. But as we learned this time, the vertigo is 99% likely to be unrelated to Robert's HD and is treatable.

We know that one day we will go to the doctor and be told that it has started in Robert. That he has reached that magical age for his body and the disease has begun to take him away from us. And we live each day knowing that it is one day closer. And we worry that some random thing may be that first symptom. But, we also have to remember that the random thing may not be HD at all. So, even though we may not want to hear what the doctor has to say, we need to go and hear it from him. Because, as it turns out this time, it could be something else entirely that is serous but not related to his HD at all.